Quality Safety and Outcomes Policy Research Unit
Public Involvement and Engagement Strategy
Produced by the QSO Public Involvement Strategy and Implementation Group
Jan 2020
About the Quality Safety and Outcomes Policy Research Unit
The Quality Safety and Outcomes Policy Research Unit (QSO PRU) is a collaboration between the Universities of Kent and Oxford, the London School of Hygiene and Tropical Medicine (LSHTM), the Picker Institute and Hull-York Medical School. It is funded by the NIHR from 1 January 2019 for five years.
The purpose of QSO PRU is to produce robust, relevant and usable research to improve the quality and outcomes of the health and social care system. We consider quality to encompass three key domains:
Safety: people are protected from avoidable harm in (the implementation of) their care and treatment, and when mistakes occur, lessons are learned.
Effectiveness: people’s planned care and treatment should be effective and promote a good quality of life.
Positive experience: in the process of providing services and support, staff and providers should be caring, responsive and person centred.
The underlying premise of our work is that improvements in the way we use health and care resources (inputs) will lead to improved outcomes for people using those services, and for staff engaged in providing health and care. Quality is a measure of how well our use of resources translates into outcomes.
We aim to produce research that:
- covers the spectrum of monitoring and learning from the past to future-preparedness
- considers quality at the level of the intervention/organisation and also at a system and societal level
- uses a multi-disciplinary perspective
- can be used to directly inform policy and practice, and includes consideration of any issues regarding the implementation of those policies.
The PRU’s work will be framed by five interrelated themes.
- Appropriate measures of quality and outcomes for health and care systems
- Learning from specific (adverse) incidents
- Understanding and addressing system and population level variation in quality
- Resolution after harmful events
- Identifying effective approaches to implementation of systems to promote quality
Vision and Values
Recognising the distinct features of a policy research unit (PRU) we are committed to enhancing our work through public involvement and engagement (PPI/E), and see this as an integral part of research which is policy relevant and of public benefit.
Our vision for meaningful PPI/E is where interactions between the public and researchers facilitate a process of two-way learning, improving the overall quality and value of the research and subsequent policy.
Through their involvement in QSO the public generate ideas and shapes priorities for research and are involved in all stages of its conduct, delivery and communication. The research themes of this unit will involve people with direct experience of a condition, or a service (whether as a patient/service user or carer and members of the pubic), who are able to offer a wealth of expertise and knowledge which will shape research and policy in health and social care.
In the implementation of our strategy for PPI we will strive to support the principles laid out in Going the Extra Mile (NIHR Breaking Boundaries review), particularly as they relate to NIHR-funded programmes and we will be guided by the UK Standards for Public Involvement.
Diagram produced by the UK Standards Partnership (https://sites.google.com/nihr.ac.uk/pi-standards/home
Strategic objectives
Our five strategic objectives for PPI/E in the QSO PRU are depicted in Figure 1 and explained below:
Figure 1. QSO PRU’s PPI/E structure and organisation
1. Provide direction and governance to QSO PRU
To help the shape the overall direction of QSO PRU it will be important to ensure the views of representatives, patients, carers, service users and the public are considered and reflected in the main research themes of the PRU. We will aim for patient and public considerations to influence priorities for research and also the configuration of themes proposed in the work programme. Going beyond this, members of the public will also have the opportunity to work in research teams to generate and refine research ideas, plan and deliver projects.
Patients and the public will be represented in the management of QSO PRU though our two public co-applicants (Jennifer Bostock and Matthew Baker). We will seek comments on the organisation, management and delivery of QSO PRU, striving to have a patient and public perspective at the centre.
2. Meaningful approaches to patient and public involvement and engagement
We see PPI/E as an organic process, one which should be flexible, participative and be able to draw upon creative methods. QSO PRU seeks to adopt meaningful approaches for PPI/E, the nature of which will evolve over the life of the PRU. A focus on meaningful approaches will enrich and broaden the patient and public involvement experience for all and will enable contributions that lead to high quality research. It is hoped that this approach will not only contribute to the work of the unit and the impact this has, but will foster productive relationships that will be shared across public networks to encourage the wider public to be involved with and enthusiastic about research.
Patients and the public will be involved at the earliest opportunity. Through our approaches to PPI/E we will seek to involve people in a range of activities throughout the research cycle, where possible using co-production methods. Examples of opportunities for involvement include, but are not limited to: generating ideas, helping projects to better communicate with and recruit participants. Lay-researchers will have opportunities to be involved in data collection processes such as peer interviewing, analyses of data, through to providing interpretation and comment on relevance and implications. Involvement in dissemination plans and activities will also be highly valued as part of QSO PRU’s public engagement work (outlined further under shared learning and knowledge transfer).
Having people with personal experience of the care and services on projects is expected to improve the research. Projects concerned with safety and harm incidents are a good example, given the sensitivities of this research topic.
3. Capacity building
Through QSO PRU we will be developing a model of best practice for PPI/E which is reciprocal, sustainable and will have application in a range of other contexts. This will be achieved through collaboration and our vision for sharing of experience and learning.
Specifically we will develop a network of research advisors who will become skilled at working within research teams and who, in turn, will contribute to researcher’s development for providing meaningful public involvement. This will lead to a virtuous cycle of capacity to deliver PPI which is flexible, valued, and resilient.
We will aim to have a facility for other projects and research units to either commission PPI on projects or for QSO PRU to provide PPI training. We expect that PRUs will play a part in supporting local and regional PPI/E participation, e.g. working with other NIHR programmes.
The PRU will develop systems for training researchers and advisors. Other support mechanisms will also be established, such as PPI handbooks for researchers and advisors, a peer mentoring/buddy system (see also below). We will also offer an annual event to research advisors to review the work of the QSO PRU and evaluate PPI/E processes, successes and areas for development. Finally, we will operate quarterly advice sessions for anyone to bring along their PPI/E conundrums.
4. Shared learning and knowledge transfer
PPI input is invaluable in supporting the presentation and dissemination of the PRU’s research and, in particular, in helping the research to have impact. We will aim for PPI to provide this support at a number of levels. First, we will create opportunities for PPI representatives to be co-authors on papers, present at academic conferences etc. Second, Research Advisors will have a role in helping communicate research in appropriate formats to policy, public and practitioner audiences (e.g. blogs, summaries, infographics, policy conference presentations etc.). PPI/E will help to contextualise the findings and implications of the research. Shared learning and knowledge transfer will be planned and discussed at a strategic level.
Through our commitment to building capacity we will work closely with other PRU’s on shared learning and knowledge transfer as this relates to both the research and policy implications, but also in sharing learning and knowledge in relation to PPI/E. QSO PRU already has strong links with the following PRU’s-
- Policy Innovation Research Unit (PIRU)
- Adult Social Care Research Unit (ASCRU)
- Behaviour and Science Policy Research Unit
- Cancer and early diagnosis Policy Research Unit
5. Review, evaluation and impact
In line with the INVOLVE standards we will seek to review and evaluate our PPI/E and the impact this has. This will form one of the core elements of our PPI/E strategy. To develop and review methods and approaches to maximise the value of PPI input the PPI/E process will be seen as dynamic and evolving. We will aim to explore the best methods for PPI/PE in QSO PRUs research, seeking out and drawing on current debates about best practice. This would also include the review and evaluation of PPI/E to explore which are the most effective forms of input, involvement and engagement.
Regular review of implementation will employ the PPI standards, elucidating examples of impact we will develop a range of narrative approaches to reviewing impact. The focus of review will be on reciprocal learning and reflection on the quality and impact of QSO PRUs research. These processes will feed into the virtuous cycle of improvement and capacity building we see as essential to meaningful PPI/PE.
Impact will be considered as a five way process, on-
- quality of research
- policy makers and production
- practice and therefore end users experience
- research staff and research advisors
- the wider public generating enthusiasm for research and PPI
Organisation and delivery
Structure and organisation
Both of QSO PRUs lay co-applicants are full members of the PRU management. Figure 2 below depicts the PRU’s PPI/E structure and organisation.
Figure 2. QSO PRU’s PPI/E structure and organisation
The Public Involvement Strategy and Implementation Group
The Public Involvement Strategy and Implementation Group (PI-SIG) will feed into all aspects of the unit’s work from idea generation, priority setting, through conduct and delivery of research, dissemination and evaluation. PI-SIG will support the delivery of all the strategic objectives outlined above, and the following activities in particular. As regards meaningful approaches a key role of PI-SIG will be to ensure that PPI/E is utilised effectively throughout the whole range of QSO research activities, by planning and deploying PPI/E resources. PI-SIG will oversee the development of a PPI/E Implementation plan.
As regards capacity building, PI-SIG we will develop systems for training researchers and advisors. The group will lead on the establishment of other support mechanisms, such as PPI handbooks for researchers and advisors, a peer mentoring system whereby a member of PI-SIG can buddy up with research advisors to support them in carrying out their PPI/E work. PI-SIG will also support research advisors, for example, by hosting an annual event and operating quarterly advice sessions for anyone to bring along their PPI/E conundrums.
PI-SIG will play an important role in shared learning and knowledge transfer, leading strategic discussion and planning of arrangements for working with other groups to share learning and knowledge.
A core responsibility of PI-SIG will be for review, evaluation and impact, particularly the development and review of methodologies of PPI/E. PI-SIG will use different approaches to reviewing PPI/E activity in QSO.
The membership of this group incorporates four PPI advisors along with the unit directors and senior researchers as well as the Public Involvement and Engagement Manager. The PI-SIG is chaired by a PPI co-applicant and the group have an agreed upon terms of reference.
Public Involvement Research Advisor Network
The PSSRU’s existing Public Involvement Research Advisor Network (PIRAN) will be expanded to fulfil the unit’s remit as the source of PPI inputs to specific projects. PIRAN will comprise a range of PPI representatives from different backgrounds. We will advertise and recruit membership to reflect the range of themes in the PRU and will seek to diversify who we involve in research through outreach to various community organisations and through links with HealthWatch. PIRAN members will be commissioned on a case-by-case basis. We will follow the successful funding and commissioning model set-up in the Department of Health-funded Quality and Outcomes of Person-centred Care Policy Research Unit (QORU), a model of good practice other research organisation have already successfully replicated. Other PRUs will continue to access the expertise of the enhanced PIRAN (e.g. PIRU).
Dissemination and impact subgroup
The PRU will also set up a dissemination and impact subgroup of the PI-SIG. A key function of the subgroup will be to advise on the dissemination and translation into practice of the research findings from all themes. As noted, PPI advisors will be engaged in co-authorship of academic articles, co-presenting at clinical and public events/conferences and will be advocates and spokespeople for our work when engaging with policy makers and the wider public. We will utilise the expertise of our public advisors in creative dissemination methods such as twitter, blogging, film and online forums and will capitalise on the range and breadth of patient/carer/public groups to widen the reach of our dissemination strategy to ensure maximum impact. We shall have an Impact Fund whereby public advisors can bid for funds to disseminate research findings, PPI/E practices and/or promotion of the unit.
Public Involvement and Engagement Manager
The QSO PRU has appointed a Public Involvement and Engagement Manager, who will be a member of PI-SIG and will co-ordinate its work. The PI/E Manager will also have responsibilities for co-ordinating the involvement of members of PIRAN in projects and organising PI-SIG meetings and events. The PPI/E manager will have oversight of the implementation of the strategy and be responsible for its implementation along with the members of PI-SIG.
Leadership and reporting – Governance
PPI/E will be a standing agenda item at QSO PRU leadership meetings, and a report will be required from the PI-SIG at each meeting. The PPI co-app representative will report back on issues pertaining to PPI/E and this mechanism will allow PI-SIG to raise matters for discussion at these management meetings.
The PI-SIG will require reports on projects where there is significant PPI/E, this will assist the group in reviewing the effectiveness of the strategy and will inform how the strategy evolves and is implemented throughout the lifespan of the PRU.
Other partners and collaborators
We wish to continue to expand the involvement of individuals who have experienced problems of patient safety. To this end, we will work with the existing links we have such as with Action Against Medical Accidents; Carers UK; Alzheimer’s Society. MRSA Action UK; Ehlers Danlos Foundation; Mental Health Network; Sepsis Trust; Brain Research Trust; UK Infection Research Network; AMR working party; HQIP, Cancer Research UK. National Voices (Jeremy Taylor CEO) has agreed to help develop proposals for this aspect of patient involvement.
Resources
QSO PRU has the following resources for PPI/E-
People:
- Public Involvement and Engagement Manager at PSSRU
- Administration for payments and room bookings at PSSRU
- Two PPI Co-applicants
- Public Involvement Strategy and Implementation Group- with 4 public members
- Public Involvement Research Network- a network of over 20 lay Research Advisors across the UK.
Other resources:
- Financial resources- we have a payment policy for involvement and follow INVOLVE guidance for payments.
- Significant costs to support leadership, learning and dissemination.
- PIRAN annual research advisor network meeting.
- Mentoring, training and support for research advisors and researchers.
- Impact fund open to Research Advisors.
Appendix 1. QSO PRU’s collaborators
QSO PRU PPI/E team has close collaborations with-
Other PRUs-
- ASCRU
- PIRU
- Behavioural Science
- Cancer awareness and screening/early diagnosis
NIHR-
- School for Social Care Research
- School for Public Health Research
- NETSCC- leadership group for PPI
- NIHR funding panels
- Research Design Service (London and South East)
Other Universities-
- Kings College London
- London School of Economics
- Cambridge University
- Newcastle University
- Lancaster University
- Liverpool University
- Warwick University
- University College London